Please help

[Gcart]

Can Jimh111 offer some help please .

I have had best good quality of life for a couple of yrs with the help from here .

TT carcinoma / no need of radiation 4 years ago .

Seeing an Endo , unfortunately for another condition he has advised my GP to reduce do to 50 mcg T4 .

I currently take 75mcg and obtain 10mcg T3 from Germany ( that seems to have now stopped) but another worry for later

This seems a low dose anyway .

I had genetic test done for my own records .

They came back

TSHR. Double red

TRHR. Double red

PDE8B. Double red

I understand this may mean my TSH doesn’t respond very well .

I am now scared of the future and need anything to assist my case for GP to ignore this reduction.

Thank you for any thoughts

[greygoose]

jimh111

[Gcart in reply to greygoose]

Does that take my text to him? Thanks if it does .

[helvella Administrator in reply to Gcart]

If you type "@" then start typing the member's name, you should see a list of names appear at the bottom of the message box. When you see the one you want, click on it (or continue typing more characters).

I have added spaces between the letters so it doesn't change colour and call out.

@ g c a r t

Gcart

[Gcart in reply to helvella]

Thanks I will try to do that.

[SlowDragon Administrator]

Your Ft3 and Ft4 look too low ...we need ranges on all test results please

Looks like another TSH obsessed endocrinologist

Recommended on here that all thyroid blood tests should ideally be done as early as possible in morning and before eating or drinking anything other than water .

Last dose of Levothyroxine 24 hours prior to blood test. (taking delayed dose immediately after blood draw).

This gives highest TSH, lowest FT4 and most consistent results. (Patient to patient tip, best not mentioned to GP or phlebotomist)

If/when also on T3, make sure to take last dose 8-12 hours prior to test, even if this means adjusting time or splitting of dose day before test

Is this how you do your tests?

When were vitamins last tested?

Private tests are available. Thousands on here forced to do this as NHS often refuses to test FT3 or antibodies

thyroiduk.org.uk/tuk/testin...

For thyroid including antibodies and vitamins

Medichecks Thyroid plus ultra vitamin or Blue Horizon Thyroid plus eleven are the most popular choice. DIY finger prick test or option to pay extra for private blood draw. Both companies often have special offers, Medichecks usually have offers on Thursdays, Blue Horizon its more random

[Gcart in reply to SlowDragon]

The Hospital hasn’t given the ranges , guess it’s done on purpose. I guess they know we are getting more savvy !

Doubt if I can obtain that now sadly

[SlowDragon Administrator in reply to Gcart]

What vitamin supplements are you currently taking? When were vitamin levels last tested?

Suggest you consider getting full thyroid and vitamin testing privately

On almost any dose of T3 TSH becomes suppressed..

On T3 ...You can be under treated and have suppressed TSH ....which is what these results suggest

Do you do tests timing as recommended?

[Gcart in reply to SlowDragon]

B complex solgar Extra high potency

Vit D3 1000IU

k2 50ug

Not had BH blood test as I have so much trouble getting enough blood .

Before is hit me I was probably thinking I might increase 25 as a trial

Having given up gluten my bowel symptoms are totally settled .

Having suffered that for years , it’s amazing . Info from here 🙂

I know my nutritional state has improved greatly as a result , so that must help .

Although my blood test was in the afternoon . I timed my hormones as suggested here , not ideal but all I could do .

My battery is about to die now !

[SlowDragon Administrator in reply to Gcart]

Did you remember to stop taking vitamin B complex a week before ALL blood tests?

Biotin in vitamin B complex can falsely affect test results

Vitamin D - highly likely 1000iu is inadequate dose ...especially as gluten was obviously an issue

Are you supplementing any magnesium?

Suggest you order vitamin D test here (Only 4 drops blood required)

vitamindtest.org.uk

Looking for vitamin D to be at least around 80nmol and around 100nmol may be better

Magnesium

betterbones.com/bone-nutrit...

medicalnewstoday.com/articl...

livescience.com/61866-magne...

sciencedaily.com/releases/2...

What was your levothyroxine dose before T3 was added?

Was it based on dose by weight NICE guideline?

nice.org.uk/guidance/ng145/...

1.3.6

Consider starting levothyroxine at a dosage of 1.6 micrograms per kilogram of body weight per day (rounded to the nearest 25 micrograms) for adults under 65 with primary hypothyroidism and no history of cardiovascular disease.

BMJ also clear on dose required

bmj.com/content/368/bmj.m41

[Gcart in reply to SlowDragon]

Oh yes. My vit D. Was 53. I know the gp said it was ‘ in range’

I will do as you say and increase dose .

My T4 dose after op was 75 for 5 days 100 for 2 days

I was 50 kilos at the time so surgeon worked on the dose I see quoted here sometimes .

Never ok til added 10.mcg T3. Which has been suiting me.

I did stop b vit for bloods.

I will do more reading re magnesium I do have something me. Citrate as I had constipation before . Not an issue now !

Thank you, for your input. 🙂

Can’t imagine if I fail to obtain my T3 in the not too distant future and be put on 50 mcg Levo ! That can’t be right or kind with no thyroid 😢

[SlowDragon Administrator in reply to Gcart]

You likely need levothyroxine at 75 for 5 days 100 for 2 days. ....AND T3 alongside as well

Suggest you increase vitamin D to at least 2000iu and get FULL thyroid and vitamin testing in say 6-8 weeks

Do you always get same brand of levothyroxine?

[Gcart in reply to SlowDragon]

So far. I have Actavis on script. I open at pharmacy

I will take yr advice and hope gp will continue to supply enough

Thanks for input.

[jimh111]

Your TSH is very low with both fT4 and fT3 below their mid-points. As far as I can see you've had these sort of results ever since you had your thyroid removed. Your TSH is always lower than expected for these sort of serum hormone levels. I find I'm saying the following so often nowadays. After a period of high hormone levels the hypothalamic pituitary thyroid axis can become down-regulated. This leads to subnormal TSH secretion, TSH is lower (for fT3, fT4) than it would be in other people. This means TSH is no longer a reliable marker for thyroid hormone status. Subnormal TSH also reduces T4 to T3 conversion and so the patient needs some T3 medication.

If you have any blood tests from or before your thyroidectomy they would be useful. They might show you had high thyroid hormone levels at the time. In any event your doctor should go by your signs and symptoms and use fT3 and fT4 as a guide to blood hormone status. TSH is not accurately reflecting your blood hormone status and so is no use as a marker for thyroid status. You are on 75 mcg L-T4 + 10 mcg L-T3 which equates to 105 mcg L-T4 which is a low dose for someone without a thyroid.

[Gcart]

thank you for that .

Hopefully this will help my case .

Unfortunately I only have knowledge of TSH prior to operation. I was told all in range .

I had no knowledge about thyroid and all my symptoms were attributed to another problem I have .

My condition was ignored for at least 8 years during which time my life wasn’t worth living .

After TT I have gained enough health to say I am ok 🙂Mostly having symptoms addressed by support of thyroid hormones and help from this forum .

Now faced with some Endo trying to reduce dose further .

To say I’m afraid of going back to that life is an understatement.

Sorry to moan . We all have had many problems with this disease

Thanks anyway Jimh111